Thursday, January 10, 2013

An Anniversary and Update

Today marks two years since Eli's fist open heart surgery.  Monday, January 10, 2011.  The days leading up to it were a blur of exhaustion, a roller coaster of emotions, and gathering information about our baby that no parent wants to explore.  If we didn't proceed with surgery, Eli would be dead by the weekend.  If he had surgery, he may not live through it.  If he lived through it he might be on a heart-lung bypass machine.  If he lived through all that, we had no idea how long he'd live or what his quality of life would be before he required a transplant.  Too many unknowns and the only certainty was that we had to do something.  This was our baby.  Despite his deteriorating condition we could still see his perfection.

The last few hours before he was taken for surgery were filled with tears and pleading to God that our baby live through the operation.  We were so scared he was going to die.  Of course we were hoping he would live, but our faith was so rocked by the news of his diagnosis that it was hard to be hopeful.  I prayed nicely, I gave praise, I questioned Him, I mentally yelled at Him, I begged, and pleaded, knowing the whole time that God "owed" us nothing.  I finally stopped with the words and just asked God to hear the prayers in the silence of my heart.  Thankfully the plan was for Eli to make it through that surgery (and the other surgeries, heart catheterizations, and procedures he's survived since then). We are so grateful that he's still with us.  We don't know how long we have him so we cherish each day the four of us have together...even when he's playing in the toilet water.  As I was typing this paragraph Zachary hollered for me to help him.  I walk into the bathroom to see Eli splashing in the "just used" toilet bowl.  Now, after a quick bath and change of clothes, I'm rereading those words and already laughing about how Eli chose to celebrate this occasion!  Timing is everything!

It's been a long two years, but the emotions of the days leading up to that first surgery and the time he was in the OR will never leave me.  They seem especially fresh as we are starting some preparations for his next surgery.  Eli's last cardiac check up was in December.  His oxygen saturation was about 75%.  As expected, his levels are slowly but steadily declining.  The goal was for him to reach 25-30lbs before the third surgery and his last documented weight was 25lbs 9oz.   His steady weight gain and declining sats are leading us to think his surgery will likely be this spring.  He's scheduled for an echocardiogram (ultrasound of the heart and its vessels) and and EKG (electrocardiogram, measures the electrical activity/rhythm of the heart).  Those will be done with our Evansville cardiologist in mid-February.  Those results will be sent to our main cardiologist in Indy and they will decide when he needs the Fontan.

We celebrated New Year's Eve 2010 with friends who are like family and were excited to begin 2011 as a family of four.  2011 wasn't the year we expected and was filled with stress, to say the least.  We were ready to say goodbye to 2011 and have a fresh start in 2012.  It was a good year for us, no major medical procedures other than a maintenance heart cath and, most importantly, no surprises!  As 2013 begins, I'm filled with apprehension.  I know Eli will have another open heart surgery sometime this year.  I know more about his condition.  I know more of the positive outcomes and the negative outcomes.  Not only are we on an emotional ride this time, we have more knowledge and that is helpful yet it comes at a price.  And of course we're not only worried for Eli but for Zachary as well.  We've never hidden Eli's condition from him, but it's hard to explain to a little kid.  He's older now and has more questions.  He understands enough to know that it's serious but not enough to fully comprehend what could happen.  It's hard trying to explain the truth without scaring him...or me.

Something that's become more and more obvious to me is that we need more awareness about Congenital Heart Defects.  Most people reading this blog, myself included, were pretty much clueless about the prevalence of CHDs prior to Eli's diagnosis.  Even now, as I do more research, I am shocked at some of the statistics I've come across.  I have shared a few of those with you before and will be doing a lot more soon.  I want to ask that you mark something on your calendars:  February 7-14 is CHD Awareness Week.  I will be doing some things to promote that week.  I'm not doing any fundraisers for it, my goal this year is to simply raise awareness.  I will let you know what we have in store as we make more plans  I want you to put it on your calendar when you finish reading this.  As you're going about your daily life try to mention CHD Awareness to someone new each week as CHD Awareness Week approaches.  My next post will have more information and statistics.  You don't have to memorize it, but just remember something from it that you didn't know before and share it with someone each week.

Thank you for reading, for praying, for all the encouraging comments, hugs, and support we've received.  I'll close with a few pictures of Eli on that day two years ago and now.

Bryan's parents brought Zachary to visit the day before surgery.  Sweet Zachary wanted to lay next to his baby brother before they left.  He wasn't phased at all by Eli's tubes, monitors, and equipment.  Look how young Z looks in this picture!  He was just a baby himself!

A kiss on the head for Eli.  I was so afraid this was the last time my two boys would be together.

A picture of the four of us before Zachary left with his grandparents.  I think we were looking at 6 different cameras because so many people wanted to capture this moment for us (the staff bent the visitation rules for us a little bit).

One of the last pictures of us holding Eli before surgery.  Neither of us slept the night before and there were lots of tears and hugs.  We kept smiles on our faces to keep from breaking down.

Our little hero!  This was taken about 4 hours post operatively.  He was swollen and covered in tubes, monitors, tape, and wires, but we really didn't see much of that.  We were enamored with our strong baby who had fought the odds and was surprising his healthcare team with how well he was doing. 

Eli today.  If you ask him where his smile is he will crinkle his nose and give this huge goofy smile that cracks us up every time we see it.  He's definitely a comedian.
Now go mark CHD Awareness Week on your calendars.  It's February 7-14th.  Spread the word!!!!

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